Addressing Persistent Challenges in NMOSD Diagnosis and Treatment: Sumaira Ahmed

WATCH TIME: 4 minutes

"We need to continue raising awareness of the fact that there are 4 FDA-approved therapies designed for [patients with NMOSD who have] aquaporin-4 positivity, so that hopefully they can get on those drugs and be relapse-free forever."

Neuromyelitis optica spectrum disorder (NMOSD) is frequently misdiagnosed, particularly as multiple sclerosis (MS), leading to significant delays in appropriate treatment. A retrospective study involving 199 individuals with confirmed NMOSD reported that approximately 40% were initially misdiagnosed, resulting in a mean delay of 5 years before receiving the correct diagnosis. Factors contributing to misdiagnosis included the presence of protracted nausea, vomiting, or hiccups without accompanying neurological symptoms, delays in obtaining MRI studies, and extended time before consultation with neuroimmunology specialists. These diagnostic challenges not only prolong patient suffering but also increase the risk of irreversible neurological damage.¹

Compounding the issue of delayed diagnosis, disparities in NMOSD care disproportionately affect racial and socioeconomic groups, further exacerbating health outcomes. A study focusing on pediatric patients with NMOSD revealed that Black and low-income individuals experienced higher disability scores and increased hospitalizations compared with their non-Hispanic White peers. Contributing factors such as public insurance status and residence in disadvantaged neighborhoods were linked to higher relapse rates and greater disability, underscoring the urgent need for targeted interventions.² Addressing these challenges may require a multifaceted approach that prioritizes both clinical education and health equity.

Recognizing these ongoing issues, Sumaira Ahmed, founder and executive director of The Sumaira Foundation, spoke with NeurologyLive^® at the recently concluded 2025 Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum, held February 27 to March 1, in West Palm Beach, Florida. She emphasized the need for increased awareness of FDA-approved NMOSD treatments, greater accessibility to care, and more inclusive clinical trials. Additionally, she highlighted the role of social determinants of health in shaping disease outcomes and called for a continued commitment to diversity, equity, and inclusion within the medical community. As research and advocacy efforts progress, Sumaira noted that ensuring that all patients receive timely, accurate diagnoses and equitable care remains a critical priority.

Click here for coverage of 2025 ACTRIMS Forum.

REFERENCES
1. Smith AD, Moog TM, Burgess KW, McCreary M, Okuda DT. Factors associated with the misdiagnosis of neuromyelitis optica spectrum disorder. Mult Scler Relat Disord. 2023;70:104498. doi:10.1016/j.msard.2023.104498
2. Poisson KE, Nguyen L, Horn PS, et al. Racial, Ethnic, and Socioeconomic Disparities in Pediatric Aquaporin-4-Positive Neuromyelitis Optica Spectrum Disorder. Pediatr Neurol. Published online October 11, 2024. doi:10.1016/j.pediatrneurol.2024.09.028